We can’t forget community-based care during the pandemic

I am pleased to share a guest blog with you today, written by Dr. Nora Fayed. Dr. Fayed is an Assistant Professor in the School of Rehabilitation Therapy. She is an occupational therapist and a health services and systems researcher.

Dr. Fayed has touched on an important issue and I hope that, after reading the blog, you will share your thoughts by commenting below.

Richard

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COVID-19 surprised us all. Canadian providers and policy-makers quickly mobilized to create a response aimed at protecting the health of our population. The responses included repurposing factories for medical equipment, flatten-the-curve media campaigns, and a deeper public understanding of the importance of emergency room access, intensive care service, and personal protective equipment for hospital workers.

There is a concomitant cost to focusing on hospital-based healthcare at the expense of other areas of the system. In this first wave of the pandemic, COVID-19 has claimed higher infection and mortality where skilled healthcare is less visible and understood by the public such as long-term care and residential care. Now that we are aware of this oversight, it is time to prevent more of them.

Specifically, we need to talk about community-based care.

The consequences of averting the public, policy, and provider gaze away from community-based care is costly to us all. What informs this perspective? My research focuses on evaluation of a Ministry of Health funded coordinated-care intervention dedicated to children with high levels of medical complexity, complex disabilities, and their families. Depending on how you define them, they represent only 0.5-2% of children but require 1/3 of all Ontario health spending for kids. This phenomena of a small group of complex patients requiring the bulk of health spending occurs across the lifespan in Canada.

Lately, some events have me concerned.

All of these concerns fall under the umbrella of small gaps in community-based care that might result in avoidable care urgencies for the most complex patients and people with disabilities. Inclusion and foresight of community care at all levels will prevent us from overwhelming hospitals downstream..

Firstly, complex patients, their families, and people with disabilities are scared. Preliminary data I have begun collecting on children and families in pediatric complex community-based care suggests they are actively declining or reducing home care. This could be because of caregivers’ worries that their children are more vulnerable to viral attack than the general public, perceptions that home health workers may transmit the virus, or beliefs that workers lack the proper precautions or equipment to prevent disease spread. The extent to which complex patients at home are being exposed, is one worthy of discussion by the appropriate experts, but not the issue I am raising here. My concern is the preventable mental and physical health burden taken on by caregivers and the lack of patient monitoring that can result in illness and hospital admissions. For example, if caregivers can’t get the sleep they need, they can make mistakes with their child’s medications, their medical technology, or end up at the hospital with general burnout or inability to cope. Our caregivers are a precious resource in the effort to maintain community-based health. As providers, we need to take actions that help them maintain their health and that of their children at home. Luckily, community-based care strategies have been considered in our region, and there are indications that we are faring comparatively well. However, attention to community-based health care is not universal in all regions.

What can providers do? Talk to your clients and patients and begin to learn what is needed to maintain their trust in home care. If the issue is family perception of infection control, 1) stay informed about the latest evidence on what it would take to control exposure, 2) provide access to webinars or infographics that help everyone stay informed, and 3) if needed, walk families through best procedures, step by step, to help them feel trust in their home health supports. Discuss the benefits and challenges of receiving home care with each individual family.

What can policymakers do? During decision-making, consider if/how many services that are being delivered in the community are essential even if they are not hospital-based. In Ontario, a highly essential reimbursement for health service has been suspended in the form of the closure of the Ontario Assistive Device Program (ADP) office. The ADP program funds over 8,000 types of medical technology and assistive devices such as insulin pumps and supplies, respiratory equipment, pressure modification devices wheelchairs, enteral feeding supplies, and home oxygen. These devices and technologies are not the bells and whistles of health care; they are essential. They allow children and adults with complex illness and disability to survive and thrive in their communities and prevent the need for hospital emergencies.

The issue of the ADP office closure was raised by the Ontario Society of Occupational Therapists in conjunction with many Ontario tertiary care centres. The government response was that applications will continue to be processed, but only for patients who require equipment to be discharged from hospital to home. This leaves a gap, in that applications for new or existing equipment - that keeps children from going to hospitals in the first place – are not currently considered. This means that children with medical equipment needs they can’t afford will need to go to the hospital to get them. This is not an efficient use of our healthcare system.

The Ontario government also clarified that the ADP office will continue to make transfer payments to device and equipment suppliers (based on past claims) to keep the supply chain afloat. This practice seems like a solution, except it places the burden on suppliers to fill orders in advance, not knowing for certain whether the orders are for the appropriate equipment, or whether they will receive reimbursement. Essentially, suppliers are being asked to take on liability for the appropriate equipment and the expense for it. At the same time, low income families might not be able to pay the costs up front. It is time to close this gap in essential service.

A final note to my fellow therapists and health care professionals. If you are an ADP authorizer, I encourage you to take into account the pressures and demands of COVID-19 and consider the consequences to individuals on your caseloads of not conducting assessments for ADP eligibility. Make those consequences known to your employers and your community. A broader understanding of the issue will encourage policy-makers to be aware and inclusive of patients who need this service.

The progress we have made in Ontario with our pandemic response is laudable. But it has only begun. My message as an occupational therapist and a health services and systems researcher is that we need to remember community-based healthcare so we can continue to maintain our progress in supporting some of the populations who need it most. In doing so, we will all benefit.

Rosemary Lysaght

This is a big concern for all of us as citizens and community members who want to slow the spread and prevent unnecessary suffering. The other big worry for people needing in-home care is the lack of PPE for care providers, and the need in many cases for vulnerable people and their families to themselves supply the PPE for personal care attendants, homemakers, and other providers who move from home to home. Do they forego the care, or subject themselves to great personal health risk? Not a great set of options.